Hemophilia is a genetic bleeding disorder that mostly affects males. Factor is a protein in the blood that controls bleeding and promotes clot formation. With hemophilia, the blood does not have enough clotting factor to clot properly. People with hemophilia do not bleed any faster than normal, but may bleed for a longer time.
Hemophilia is a lifelong condition for which there is no cure. It is usually inherited, meaning that it is passed on through a parent's genes, or it can be caused by a mutation—a change in the person's own genes.
What is the most common type of hemophilia?
The most common type is hemophilia A. Another type is hemophilia B. The result is the same for either hemophilia A or B: Bleeding time is longer than normal. The degree of severity of the disorder depends on the amount of clotting factor that is missing from a person's blood. It also gives some idea about the type of bleeds a person is likely to have, as well as how often a bleed may occur. Early signs of hemophilia may be prolonged bleeding after circumcision, cord removal, heel stick, or multiple raised bruises.
back to top
What are the goals of treatment?
Treating a bleed in a timely manner by replacing missing factor is very important. The goals of treatment are to minimize or reduce bleeds, and to allow the person with hemophilia to maintain an active lifestyle. How often treatments are given depends on the type and severity of the bleeding disorder. People with severe hemophilia may get factor two or three times weekly. This helps prevent joint bleeds and joint damage. Others with mild to moderate hemophilia may receive infusions of factor only as needed for an injury and dental or surgical procedures.
back to top
What treatments are available?
The most common treatment for hemophilia is the intravenous replacement of factor. Other medications may be used in addition to factor replacement therapy. These medications include, but are not limited to, Amicar® (aminocaproic acid) oral tablets or liquid, DDAVP (desmopressin) injection, and Stimate® nasal spray.
back to top
What resources do you provide for patients like me?
A comprehensive team approach is the most effective way to care for the person with hemophilia. This team should consist of healthcare professionals, including doctors, nurses, pharmacists, physical therapists, social workers, and dentists.
Our hemophilia services, in coordination with the doctor and treatment centers, provide pharmacy and nursing support needed for a rapid response to bleeds at any time. In addition, we provide personalized care and education for bleeding disorder patients and caregivers.
Our Families Supporting Families program and newsletter, The Infusion Inquirer, provides an opportunity to connect with the bleeding disorder community. You can sign up to receive this newsletter by emailing cmacdonald@optioncare.net.
back to top
Where can I find more information?
To achieve the best outcomes, you need to learn about your treatment. To learn more about your condition, please visit: www.cdc.gov/ncbddd/hbd/hemophilia.htm, www.hemophiliagalaxy.com, www.wfh.org or www.hemophilia.org.
back to top
Healthy Pointers:
- Understand the importance of education and early treatment intervention.
- See your hematologist at least annually.
- Tell your doctor about all the medicines that you are taking, even over-the-counter and herbal medicines.
- Notify your doctor before taking any new vitamins, supplements or other over-the-counter medications.
- See your dentist at least twice a year for routine dental maintenance.
- With your doctor's guidance, exercise to maintain strong muscles and joints.
back to top |
